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Merging Electronic Health Record Data and Genomics for Cardiovascular Research: A Science Advisory From the American Heart Association.
Hall JL, Ryan JJ, Bray BE, Brown C, Lanfear D, Newby LK, Relling MV, Risch NJ, Roden DM, Shaw SY, Tcheng JE, Tenenbaum J, Wang TN, Weintraub WS, American Heart Association Professional and Public Education and Publications Committee of the Council on Functional Genomics and Translational Biology, Council on Clinical Cardiology, Council on Epidemiology and Prevention, Council on Quality of Care and Outcomes Research, and Stroke Council
(2016) Circ Cardiovasc Genet 9: 193-202
MeSH Terms: Biomedical Research, Cardiovascular Diseases, Data Collection, Electronic Health Records, Genomics, Humans, Informed Consent, Patient Care, Societies, Medical
Added March 24, 2020
0 Communities
1 Members
0 Resources
MeSH Terms
Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.
Ogbogu U, Burningham S, Ollenberger A, Calder K, Du L, El Emam K, Hyde-Lay R, Isasi R, Joly Y, Kerr I, Malin B, McDonald M, Penney S, Piat G, Roy DC, Sugarman J, Vercauteren S, Verhenneman G, West L, Caulfield T
(2014) BMC Med Ethics 15: 7
MeSH Terms: Anonymous Testing, Confidentiality, Congresses as Topic, Female, Humans, Informed Consent, Male, Policy Making, Research Design, Research Subjects, Stem Cell Research
Added April 10, 2018
0 Communities
1 Members
0 Resources
MeSH Terms
Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.
Rosenbloom ST, Madison JL, Brothers KB, Bowton EA, Clayton EW, Malin BA, Roden DM, Pulley J
(2013) J Am Med Inform Assoc 20: e221-5
MeSH Terms: Biological Specimen Banks, Biomedical Research, Electronic Health Records, Humans, Informed Consent, Patient Acceptance of Health Care
Added March 7, 2014
0 Communities
3 Members
0 Resources
6 MeSH Terms
Inclusion of pediatric samples in an opt-out biorepository linking DNA to de-identified medical records: pediatric BioVU.
McGregor TL, Van Driest SL, Brothers KB, Bowton EA, Muglia LJ, Roden DM
(2013) Clin Pharmacol Ther 93: 204-11
MeSH Terms: Adolescent, Adult, Biological Specimen Banks, Biomedical Research, Child, Child, Preschool, DNA, Databases, Nucleic Acid, Electronic Health Records, Humans, Infant, Informed Consent, Young Adult
Added March 7, 2014
0 Communities
3 Members
0 Resources
13 MeSH Terms
Factors that influence parental attitudes toward enrollment in type 1 diabetes trials.
Buscariollo DL, Davidson MA, Black M, Russell WE, Rothman RL, Moore DJ
(2012) PLoS One 7: e44341
MeSH Terms: Attitude, Child, Clinical Trials as Topic, Cross-Sectional Studies, Diabetes Mellitus, Type 1, Fear, Humans, Informed Consent, Motivation, Parents, Surveys and Questionnaires, Trust
Added December 10, 2013
0 Communities
3 Members
0 Resources
12 MeSH Terms
Challenges to enrollment and randomization of the Frequent Hemodialysis Network (FHN) Daily Trial.
Sergeyeva O, Gorodetskaya I, Ramos R, Schiller BM, Larive B, Raimann JG, Ting GO, Eggers PW, Chertow GM, Levin NW, Frequent Hemodialysis Network Trials Group
(2012) J Nephrol 25: 302-9
MeSH Terms: Canada, Centers for Medicare and Medicaid Services, U.S., Humans, Informed Consent, National Institutes of Health (U.S.), Patient Dropouts, Patient Selection, Prospective Studies, Refusal to Participate, Renal Dialysis, Time Factors, Treatment Outcome, United States
Added February 26, 2014
0 Communities
1 Members
0 Resources
13 MeSH Terms
Design of clinical trials in AKI: a report from an NIDDK workshop. Trials of patients with sepsis and in selected hospital settings.
Molitoris BA, Okusa MD, Palevsky PM, Chawla LS, Kaufman JS, Devarajan P, Toto RM, Hsu CY, Greene TH, Faubel SG, Kellum JA, Wald R, Chertow GM, Levin A, Waikar SS, Murray PT, Parikh CR, Shaw AD, Go AS, Chinchilli VM, Liu KD, Cheung AK, Weisbord SD, Mehta RL, Stokes JB, Thompson AM, Thompson BT, Westenfelder CS, Tumlin JA, Warnock DG, Shah SV, Xie Y, Duggan EG, Kimmel PL, Star RA
(2012) Clin J Am Soc Nephrol 7: 856-60
MeSH Terms: Acute Kidney Injury, Clinical Trials as Topic, Critical Care, Critical Illness, Endpoint Determination, Humans, Informed Consent, Patient Selection, Postoperative Period, Sepsis, Severity of Illness Index, Wounds and Injuries
Added October 20, 2015
0 Communities
1 Members
0 Resources
12 MeSH Terms
Ethical issues in the conduct of clinical trials in obstructive sleep apnea.
Brown DL, Anderson CS, Chervin RD, Kushida CA, Lewin DS, Malow BA, Redline S, Goldman EB
(2011) J Clin Sleep Med 7: 103-8
MeSH Terms: Comorbidity, Continuous Positive Airway Pressure, Double-Blind Method, Female, Humans, Informed Consent, Male, Patient Selection, Randomized Controlled Trials as Topic, Risk Assessment, Sleep Apnea, Obstructive, Total Quality Management, United States
Added March 20, 2014
0 Communities
1 Members
0 Resources
13 MeSH Terms
Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.
Clayton EW, Smith M, Fullerton SM, Burke W, McCarty CA, Koenig BA, McGuire AL, Beskow LM, Dressler L, Lemke AA, Ramos EM, Rodriguez LL, Consent and Community Consultation Working Group of the eMERGE Consortium
(2010) Genet Med 12: 616-20
MeSH Terms: Community-Based Participatory Research, Confidentiality, Electronic Health Records, Ethics Committees, Research, Ethics, Medical, Genetic Research, Genome-Wide Association Study, Genomics, Humans, Information Dissemination, Informed Consent, Interinstitutional Relations, National Human Genome Research Institute (U.S.), National Institutes of Health (U.S.), Physician-Patient Relations, Research Design, United States
Added March 29, 2013
1 Communities
0 Members
0 Resources
17 MeSH Terms
Principles of human subjects protections applied in an opt-out, de-identified biobank.
Pulley J, Clayton E, Bernard GR, Roden DM, Masys DR
(2010) Clin Transl Sci 3: 42-8
MeSH Terms: Adult, Aged, Aged, 80 and over, Biomedical Research, Databases, Nucleic Acid, Ethics, Medical, Female, Human Experimentation, Humans, Informed Consent, Male, Medical Records Systems, Computerized, Middle Aged, Models, Organizational, Risk
Added March 5, 2014
0 Communities
3 Members
0 Resources
15 MeSH Terms